Scleroderma is a chronic, complex, and often life- threatening disease affecting the lives of hundreds of thousands of people around the world. The word scleroderma literally means “hard skin” and the disease is most visibly characterized by fibrosis or hardening of the skin. However, depending on the subtype of illness, scleroderma can damage the lungs, kidneys and gastrointestinal tract with life-threatening consequences. Damage to the vascular system due to scleroderma can result in loss of digits or limbs. In some cases, the joints and muscles are affected, resulting in a loss of mobility.

The symptoms and severity of scleroderma vary from one person to another and the course of the disease is often unpredictable. Roughly 80% of patients are women, with typical disease onset between the ages of 20 and 50, but scleroderma also affects men and children across all ages and ethnic backgrounds. Though it is not contagious, scleroderma can affect anyone and, odds are, the only thing most people know about the disease is someone who has it.

Scientists still don’t know what causes the body to attack itself in patients with scleroderma. There is no way to prevent it and there is no cure. Treatments are available for some, but not all, of the most serious complications of the disease. Most treatments work to slow scleroderma’s progression and limit the damage but none of the current therapies truly arrest the disease.

ABOUT THE SCLERODERMA RESEARCH FOUNDATION

The SRF is America’s leading nonprofit investor in medical research aimed at discovering improved therapies and, ultimately, a cure for scleroderma. The Foundation was established in 1987 by patient and activist Sharon Monsky, who knew that a cure would not come during her lifetime but that she could make a difference for countless others. Sharon lost her battle in 2002 but the SRF continues to press forward in her honor. In 2015, the SRF provided over $1,500,000 in research grants–the largest allocation of funds in the history of the organization.

Led by a Scientific Advisory Board comprised of some of the most distinguished minds in science, the SRF program brings together experts from the fields of immunology, molecular biology, genetics and vascular biology. The SRF supports talented scientists at leading institutions including Dartmouth, Harvard, Johns Hopkins, Northwestern, Stanford, University of California San Francisco and others.

The Foundation’s collaborative approach is enabling researchers from around the world to partner with each other and develop an understanding of how scleroderma begins, how it progresses and what can be done to slow, halt or reverse the disease process. In addition, the SRF provides funding to establish and grow Scleroderma Centers of Excellence where clinicians can evaluate standards of care, scientists have instant access to tissue samples and new physicians can be trained.

ABOUT COOL COMEDY - HOT CUISINE

In 1987, with the help of SRF founding board member Susan Feniger, business partner Mary Sue Milliken and comedian Robin Williams, the SRF launched its signature fundraiser Cool Comedy – Hot Cuisine (CCHC). Hosted by SRF Board Member, Bob Saget, who lost his sister to scleroderma, CCHC is a night of gourmet cuisine and world-class comedy, featuring the foods of celebrity chefs Susan Feniger and Mary Sue Milliken (Bravo Top Chef Masters and Food Network's Too Hot Tamales) and appearances from some of the biggest names in comedy, including Bill Bellamy, Dana Carvey, Jimmy Fallon, Jimmy Kimmel, Jay Leno, Conan O’Brien, John Oliver, Ray Romano, Jeff Ross, Jerry Seinfeld, Sarah Silverman, Jon Stewart and the late Robin Williams. The event often features a special musical guest. Previous guests include Counting Crows, Sheryl Crow, Goo Dolls, Dave Koz, John Mayer, Train and others. The upcoming June 16th event will feature appearances by Bill Burr, Zach Galifianakis, Jimmy Kimmel, Ray Romano and John Stamos.

Since its inception the event has raised millions of dollars for scleroderma research and brought a great deal of media attention to the disease. It has introduced scleroderma and the Scleroderma Research Foundation to thousands of people around the country.